Write Me a Poem

A poetry reading last night. My friend Amy’s husband presented. He read poems about torture, poems about racism, poems about his beautiful daughters and a very gorgeous viscerally romantic poem about his wife.

When I got home, I took HT’s hand and led him to our back yard. We sat on the bench and looked at the stars and I told him about my night. The temperature was perfect. A slight briskness, always welcome after hot summer days. I leaned against him, stretched my legs out on the bench, his arm around my shoulder.

“How come you never write me a poem?” I asked.

He laughed and came up with a title, which was our mutual nickname I’m not allowed to divulge, said in the tone we use with each other when we’re exasperated. We say it with hands in the air, beseechingly. Someone didn’t replace the toilet paper. We say it. Someone locked the other one out. We say it. Someone forgot to put sunscreen on the kids before sending them off to camp. Hands go in the air and we say it.

We say it, but we aren’t really mad. We say it knowing full well it could have been us, just as easily as the other, making the same mistake.

HT’s read three books in the 16 years I’ve known him. He’s not a writer. But there is poetry in his love for me. Poetry in him standing at the stove at 11PM, making Seth’s homemade ketchup, (when he has to work at 6AM) just to take the edge off the things I need to do  tomorrow. Poetry in him folding laundry while he watches Sports Center.

Poetry in his ability to remind me Who I Am when I forget.

I’m not going to lie. And I probably “shouldn’t tell,” but we did some kissing on the bench in our back yard under the stars last night.

His steady love. His devotion, all the poem I need.

Posted in appreciation, marriage, Uncategorized | 5 Comments

Change of Focus

I’d say I’m about halfway back to my usual self. Not bad for 24 hours.

I’ve been spending hours every day researching the latest treatments for Seth’s PANDAS. I feel like I’m on borrowed time. I fear if we don’t get to the bottom of it there will be long term repercussions. How long can one’s brain be attacked without a price being paid? I’ve been making all our food from scratch, in a tiny kitchen, in the middle of a heat wave. I’ve been taking the supplements in advance of giving them to him, to be the guinea pig, and am going through detox. I love that my kids are at camp, and that I don’t have to work around them making a whole bunch of food every day. But I’m still making a whole bunch of food every day. My kids are growing and like little Pac-men, chomp chomp chomp always hungry. I can barely keep up.

Last evening at dinner, I told the kids I’d had a bad day and explained very briefly/lightly why, and my Riley put her fork down and patted my hand and said, “Mom. I’m sorry you had a bad day. You are a good person.”

The sweetness of her offering comfort to me, well.

My sister called a little later and got the full blubbery treatment. It helped, talking with her.

Take a breathe.

Today while the kids were at camp I took the little dog for a walk. I had a moment of wanting to carry a sign qualifying, “Not my dog. I didn’t pick a Chihuahua.” But then, Yippee was so well behaved and cute and appreciative, smiling as he trotted his little legs so fast. On my walk I decided to lift myself up by looking for signs of abundance.

There was an abundance of sunshine today.

And abundance of cattails on the lake.

And abundance of blue in the sky.

An abundance of leaves on every tree.

An abundance of ripples on the water.

An abundance of health in my body, step after step after step.

An abundance of time in which to walk.

An abundance of stones on the path.

There was an abundance of air to breathe.

There was an abundance of Queen Anne’s Lace in the field.

A heron waited until I was just 15 feet away before taking flight. He flew with an abundance of ease, flapping his wide grey wings.

So much is good and right.

Breath, after breath, after breath,

there is abundance.

Posted in appreciation, PANDAS, Specific Carb Diet, Uncategorized | 5 Comments

feeling BAD

I’ve never killed anyone.

I’ve never assaulted anyone.

When I was a kid, I was a bit of a bully. Not anything long standing or physical, but I would scorn children I deemed weak.

Once when I was teaching a class at a community college when I was about 25, I once mocked a student very subtly, because he was annoying. I don’t think he even got it, but some of the class did. In retrospect, I think the kid ever so slightly might have been on the spectrum. I didn’t know how to teach a college class. I was a last minute ringer for the semester. He kept throwing me, interrupting with irrelevant information. I smiled at him sarcastically and said, “That’s nice.” A girl in the back laughed. I still feel bad about that.

In my early 20’s I skipped a friend’s wedding reception because I was having a panic attack. I got in my car and ripped off my too tight dress and got on the highway and headed out of town toward home. I didn’t fathom the fact that it might take some of the joy out of her day if I went missing. I’d done a reading at the wedding. I wasn’t just a distant guest. This was before cell phones and I couldn’t call and let her know I was okay.

Years later, against my better judgement, I agreed to a bachelorette party about a month before my wedding. And then I agreed to the party leaving the place we were, and showing up at the bar where Todd’s ex was sure to be that night. Once we got there I felt like shit. We didn’t stay long. But I went. I didn’t stop it.

I once fiercely accused a friend of being competitive with me and it hurt her deeply.

I’ve kicked myself a hundred times for admitting as a guest blogger on another site a few months back to being hurt that some of the people I hoped would support my book, didn’t. Like seriously kicked myself, like I’m the biggest loser ever for admitting I had any expectations or that I felt hurt.

I recently had to address an issue involving a teacher and my kids, and felt like I was the one who should apologize, just for stating my valid concerns. I addressed another issue at camp this week and am having the same feelings.

Today I caught a whiff that I had stepped on a friend’s toes. Didn’t mean to, but I can see how she might be offended looking at it from her point of view.

A little mis-step like that can send me reeling into all the ways I am a bad person.

I seriously could go on and on.

But I’ve never killed anyone.

I’ve never assaulted anyone.

There’s that.

~~

I’m turning off the comments on this one. Otherwise it just seems like I’m begging for a pep talk and then I’ll feel bad about that. I’ve thought what’s the point in even publishing this, but I think there is value in knowing we all go through it to some degree. I hope next time you are feeling “bad” you will remember what you would have said to me here, and instead, say it to you. Now if you’ll excuse me, I’ve got to go do the work to get myself out of this awful spiral. I’m going to take a breath, and start here.

Posted in appreciation, Uncategorized | Comments Off on feeling BAD

Part of Me

I’m just going to come right out and admit it here amongst friends.

I saw the Katy Perry movie on Friday, and I liked it.

I never expected to. My little darling tween, asked if she could see the movie and for the first time ever if she could bring her friend L. And when your child asks for the first time ever to bring a friend anywhere, you do it. You do it gladly. Even if it’s the Katy Perry movie. Even if it’s in 3-D. Of course you force your husband to go along too, because you shouldn’t have to be the only one to endure it. So Friday it was Riley, L., Seth, Todd and I with our 3-D glasses and a purse full of snuck in healthy snacks (cheese sticks, grapes, cashews, coconut water) gearing up to watch the show.

There were previews. Many previews, and to that I said, bring them on! I will preview all night, because the air conditioning was so delicious. I could have slept there. I could still be there, and I’d be happy. After one of the previews, Riley leaned in and whispered to Seth, “That looks good, but a little inappropriate for us.” It did look good. And it was a little inappropriate for them. Good call Riley.

Finally the show began. I always thought of Katy Perry as kind of a silly, bubble gum princess. Imagine my surprise to find our she’s a real person? And even more surprising, a real artist with integrity. Now I realize the Katy Perry movie is designed to make her look good, but I really did end up liking her. Of course what’s not to like about Firework, but there is much more there. She’s really a sweet person. And honestly, the world could use more silly. More bubble gum. More happy. And that’s what she gives her fans. She makes them happy.

Riley and her friend didn’t stop chitter-chattering about it the whole way home.

“That was awesome!”

“I feel like I was actually at the concert!”

“It was sooooo good!”

As we rode along toward home Riley turned to her brother and with deep sincerity said, “Seth, I really hope you are a famous performer one day. I hope you live out your dream.”

Todd and I met each other’s eye and quickly looked away, smiling. If as children either of us had expressed a dream to be a famous performer, (which let’s face it, it’s a dream every kid has) to our siblings we’d have been quickly put in our place and laughed out of the room. The sweetness of their relationship still amazes me.

Part of Me was way better than I expected and definitely worth seeing. There were parts both happy and sad that were so poignant, I felt my throat tighten up. Call me surprised.

Riley initiated a shared experience with a friend for the first time ever, and walked away from the experience feeling inspired. She is still talking about the movie.

That right there is worth the price of admission.

My name is Michelle O’Neil, and I like Katy Perry.

Posted in appreciation, Asperger's, Uncategorized | 10 Comments

High Fructose Corn Syrup,Red #40, Yellow #5, Yellow #6 And Blue #1.

Camp is rolling along fine, and then it isn’t.

We’ve been back on the Specific Carb Diet for a couple of months(working our butts off). The kids are eating like champs. Lunches are brought from home so no big deal. Camp gives out snacks but I send substitutes. No big deal. They tell me when it’s going to be a special occasion and I send something special for the kids. Except when they don’t. Except when they out of the blue decide to give out popsicles. And I didn’t send anything popsicle-like for my two.

Seth couldn’t care less. He ate the apple he brought. Riley does not care about the food, she’s not craving the popsicle, but she cares about looking different. The first time this happened, she took the popsicle, and held it, pretending to eat it, then gave it to a friend. I was not aware it had even occurred.

But yesterday, it was too much. She did not take a popsicle, and then she had to field questions, “Why aren’t you eating a popsicle?” The questions were too much pressure. She ran and hid.

Then a group gathered around asking if she was okay, and that was the worst. More pressure. She cried. And then got a runny/bloody nose. And got a bit freaked out because everyone was looking at her and because she was crying in front of the little kids, “And I want to set a good example!” she wailed when she was explaining the whole thing to me yesterday afternoon.

Lying with Riley on her bed when she got home, we talk it through as she decompressed. My heart ached for her as I heard the tale. I fear they won’t let her be a counselor one day, (her dream) if she has problems at camp. We come up with a plan for homemade popsicles. Her aide had suggested it that morning, and I’d already called HT at work and asked him to stop at Bed Bath & Beyond on his way home to buy the molds(I’d already driven to Target for them but they didn’t have them), but we weren’t enough steps ahead. We missed it by a breath.

And even with homemade popsicles, we are not out of the woods, because these popsicles will look different than the popsicles they may or may not give out on any random day at camp. And there will be questions about the homemade popsicles. And questions are too much. Questions put you on the spot when you already don’t want to be different.

She liked the idea of the homemade popsicles, but still wasn’t sure she could manage the questions.

I asked her, “What if there were a little camper with diabetes and they couldn’t have the popsicles. Wouldn’t you feel good that you set an example of eating something different and healthy?”

“Yes, but there are no little campers with diabetes.”

Literal.

We talked about how hard we’ve worked for her to be healthy and how hard we’ve worked to get all kinds of toxins out of her body and why would we want to dump a bunch of red-dye and chemicals back in?

She wailed, “I wish people would stop giving kids junk and then I wouldn’t have to be different! Why can’t we just have watermelon!!!” 

Some days they give out fruit and then she can partake.

I explained that I wished that too, but it wasn’t our job to be food police for the world.

I said, “Riley when you were little we did this diet for you, and our whole family did it to support you. And now, if it were only you, I’d probably just let you have the occasional popsicle, but now we are doing this for Seth. What if when someone asked you about your different popsicle, you said, “My brother is on a special diet and I am supporting him. Would that be okay?”

Magic words. Big smile. This she could get behind.

I called Seth in to make sure he was cool with this, and he was fine. Couldn’t care less.

We practiced, roll playing the scenario several times last night and in the car this morning.

Off they went to camp, with their homemade popsicles. I went to yoga.

I walked in the door at 11:09, just missing the call that came through at 11:07.

It was Riley on the answering machine.

“Mom. I’m having a hard time at camp,” she said in a sweet, sad little voice.

I called back and they said she was already back in the game. She’s fine.

I don’t know what the hard time was.

I don’t ‘effing know.

Posted in Asperger's, PANDAS, Specific Carb Diet, Uncategorized | 4 Comments

Five Wishes

HT and I watched the film Five Wishes recently. It is based on the book by Gay Hendricks and was featured in The Spiritual Cinema Circle in 2007.

In Five Wishes, a man has a poignant conversation with a stranger he meets at a party. The stranger asks him this question. “If you were on your death bed, and you felt your life had not been a success, what is the one thing that if you had done it differently would have made it a success?”

I’m not feeling ready to post my answers here, but wanted to share the question.

I dug around a bit and found the short film here if you are interested in watching it for free. This is the link to the book.

For me, it was a question worth pondering.

 

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Cindy

Today is my friend Cindy’s birthday, so I’ve got Cindy on the brain. She’s one of those friends you can go months without seeing and pick up right where you left off. She’s one of those friends who really enjoys her life and you feel uplifted being in her presence. You walk away from a coffee date on cloud nine, feeling smarter and prettier and cooler than you did before.

She’s creative and funny and her heart is humongous.

She’s beautiful.

She is responsible for the cat fiasco experience of 2008.

She’s a very talented writer.

She can be irreverent and wry. She’s a big flirt.

She’s a great mom.

She has the wonderful gift of equanimity, and is able to see situations from all angles. If needed, she can hold up a mirror to my self-righteous perch, but in a way that doesn’t hurt too much. 

She’s the kind of friend you want.

Can’t say enough about Ms. Cindy Washabaugh.

Happy Birthday, you!

Posted in appreciation, Uncategorized | Tagged | 1 Comment

Daughter of the Drunk at the Bar Goes on Vacation?

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My friend Betsy went to France and during her trip she read my book. She thoughtfully decided to leave it in the library of the boutique hotel she stayed at, knowing it would find its way to just the person who would benefit from reading its message.

What’s its message you ask? Its message is: kids in your life may be going through all kinds of struggles you don’t know about and they could really use some understanding and compassion. Its message is: don’t write off a kid, or think you know what’s inside of them, based on what might be happening in their family. Its message is: one seemingly small action on your part could change the trajectory of a child’s life forever. Its message is: be kind. There is a story you don’t know behind each person you meet. Its message is: kids are way more resilient than you think.

I like the idea of someone in France picking up Daughter of the Drunk at the Bar and finding a connection with a little girl doing her best to grow up under trying circumstances in upstate NY, U. S. of A.

I like it a lot.

I have this idea of following Betsy’s lead and asking you, if you are going on vacation, to leave a copy of Daughter of the Drunk at the Bar in the perfect place, for the perfect person to happen upon it. I like the idea of “Janie,” traveling the world.

If you’re in, I’ll send you a copy for free, (until I run out). I’d love it if you’d take a picture and send it to me, wherever the book lands.

Email me. Lifeorileyo @ gmail. com

Have a great vacation, and happy travels!

Posted in adult children of alcoholics, appreciation, Daughter of the Drunk at the Bar, Uncategorized | 12 Comments

Just one of the many important things I’ve been doing while the kids are at camp

I’ve been fantacizing about cutting it all off and starting over. So I’m exploring different hair styles.

Here’s something fun.

Cosmopolitan’s virtual hairstyles.

This is Mary J. Blige me.

The hair of some other celebrity I don’t recognize…

When it changes your hair, it kind of morphs your face onto the person’s face. It’s weird.

I could go on all day.

But I won’t.

Riley, one day you’ll forgive your mother for many, many things, one of which will be putting Taylor Swift’s hair on your head, (in the photo of that day we decorated our faces with eye liner), and putting it on my blog. I know you will.

It’s what I cling to.

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Golden Ticket

Four days into summer day-camp, Seth’s tics started up again. The vocal and the whole body clenching. Has he been exposed to strep? Is he just wiped out tired from all the fun in the heat? Riley said a little girl at camp questioned him about it. “Why are you shaking?” she asked.

Riley said Seth blew off her question. He later went on to audition for the role of Charlie. The campers will be performing a Charlie and the Chocolate Factory play at the end of camp. He sang I’ve Got a Golden Ticket. I didn’t even know he knew the song. He’s only seen the movie once, during IVIG. Riley said he nailed it. She said he appeared fearless. And girlfriend wouldn’t lie.

We’ll find out if he gets the part on Monday.

He doesn’t tic when he sings.

So, Seth tics, and he just gets on with it. I watch, and go slightly into panic mode, worrying about long term effects, feeling responsible for fixing it. I so want to help this boy.

Yesterday in meditation, I was focused on Seth and suddenly felt a universal connection with all mothers who watch their children suffer. I was the mother in the third world country with not enough food to eat. I was the mother whose baby was born with a birth defect. I was the mother whose child was killed in war. I was all mothers.

I am not unique. We all want our kids to be okay.

It isn’t enough to pray for Seth. I must hold space for all mothers. All children. All suffering.

Maybe I can’t fix it, but I can love. I can send love. I can love your child as much as my own. I can understand that my suffering is not more important than yours. I am not able to do this consistently yet. I am selfish.

But every moment I touch upon it, I am healed.

That is the power of my boy.

Posted in appreciation, PANDAS | 6 Comments

Hammock Weather

The weather today is perfect. If I were going to be all, “God…I’d like to order the perfect weather, and this is what I want,” it’d be today. Sunny. Breezy. 80 degrees. It’s the kind of weather that wouldn’t cause you to break a sweat unless you are doing physical labor. Blue sky with puffy white clouds floating slow. It’s reading weather. Reading in a hammock. Then falling asleep. And when you wake up you read a little more. Then maybe have a snack, and then read again. The sound is the occasional rustle of leaves when the breeze hits the trees just right. That and the neighbor’s koi pond. 

I’ve spent most of today cleaning and cooking. Changing bedding. Went to the Farmer’s Market this morning for produce and eggs and meat, and went to Target where I splurged on new sheets. And of course you have to wash them. And what’s the point of putting new sheets on the bed, if you have have not cleaned under the bed? So I vacuumed under the beds, and dusted the dressers too. Because what’s the point of vacuuming if you havn’t dusted first? But I did sneak out to the deck with my Kindle for a break.

I’m reading Ernest Hemingway on Writing. It’s bits and pieces he said on the subject of writing,  in letters and interviews, all compiled into a book.

One thing he said was, “Remember to get the weather in your god damned book.”

That’s why I thought to mention it.

I’ve got to get me a hammock.

Posted in appreciation, Uncategorized, writing | 5 Comments

Burrowing

Yesterday, I bumped into a friend who suggested we get together for lunch while the kids are at camp. I adore this friend and would love to see her, but in my body it felt like she was asking to put a pillow over my face in an effort to kill me.

Today is the fourth day of camp. The first day I had appointments. The second day was chock full of things I wanted to do. Coffee with friends. Yoga. Writing group. Library for adult, not kid books.

The third day was full of phone conversations and errands. Little bits of writing but not enough. By afternoon when this sweet friend suggested we get together for lunch, I started to twitch.

It is time to write. I don’t want to have lunch. I don’t want to talk on the phone. I don’t want to do anything but write (I do want to have wine at porch night, but that is after writing).

After dropping the children off this morning, I pulled into our driveway. A neighbor friend was out front with a cup of tea, surveying her garden. I waved politely then looked to the ground, making a bee line into the house thinking, “Don’t talk to me, please don’t talk to me.”

It wasn’t ’til I sat down and began to type that I realized I’d not been breathing. Breathing and writing. One in the same.

Fingers flying I was filled with relief.

I’d written 1697 words before noon.

Posted in appreciation, Uncategorized, writing | 7 Comments

“…..hard, but not impossible.”

Getting ready for camp just now, Riley went into the bathroom to wash her face. The tube of face wash was really low. I’d just had a hard time getting any out when I washed my own face.

I stepped into the bathroom as she was trying to force some out.

“Riley, that tube is pretty empty, it’s kind of hard to get out,” I said, attempting to intervene and avert a huge frustrating scene for her. This is the kind of thing that can derail her. This is the kind of thing that makes parenting exhausting for me at times. Always having to be one step ahead.

She didn’t hand me the tube. She continued squeezing and said, “It’s hard, but not impossible.”

This is new.

I came downstairs and told Todd, and he looked at me incredulously.

“Who is this kid?” he asked.

The fact that she said, “It’s hard, but not impossible,” proves nothing is impossible.

Posted in appreciation, Asperger's, Uncategorized | 8 Comments

The Call

Today is the first day of summer camp for the kids. I had an appointment for an educational evaluation for Riley, so Todd dropped them off. He said our girl bopped right in, introduced herself to new counselors, greeted ones she knew  like they were old friends, initiated conversation, and was 100% bubbly tween adorable.

Walking in the house from my appointment he tells me all this, and we sit at the kitchen table, chit-chatting happily about the morning.

Todd goes up to take a shower (he works evening today) and the phone rings. Caller ID says it’s the camp.

The wind is sucked out of my sails. Son of a bitch.

Todd sees it on the caller ID on the phone upstairs. He runs downstairs to listen in as I answer the phone.

“We got too cocky,” is what he said he was thinking.

It’s the camp’s administrative office. They overcharged us by $94.00 and would it be okay if they wrote us a check, because they delete the credit card info after transactions occur and no longer have it on file to credit our account.

The lady on the line has no idea the heart attack she has just induced.

Yes, please, send us $94.00.

That would be great.

I hang up.

We meet each others eyes and release our breath.

Posted in marriage, special needs parenting, Uncategorized | 10 Comments

Email from HT Yesterday

Him: Hey dog. How are you? I hope you are having a good morning.

Me: I’m fine. We’re having a good day. BTW, It’s dawg, not dog. If you call me “dog,” it just means you think I’m not pretty.

Him: Pardon me. I have no street cred. I think you are beautiful.

I’m glad we had this little exchange.

Posted in appreciation, Uncategorized | 5 Comments

The Father of My Children

You, pressed up against my back, we’re spoons.

You breathe in and out, and it’s easier to focus on your breath than my own. I use it to go into the gap.

Napping in the afternoon on a Saturday.

You worked at 6AM and will be lost to us this evening if you don’t rest now.

This morning at 5:00, I came into the bathroom where you shaved, anxiety pressing down on my chest.

Doubts about my own goodness. That’s what it boiled down to. I spin, too empathetic, too worried. I can’t help everyone, can’t do it perfectly, can’t fix it all. I haven’t slept.

Shaving cream still in bits on your face, you take me in your arms and whisper “You are good.” You kiss the top of my head and say no one will ever be more loved than me.

I feel guilt and comfort and relief.

I never meant to need you this way.

After you leave. I do the work.  I write and write until I remember it’s not my job to fix a hurting world. I write until I remember to trust the wisdom of other souls.

When you get home, we put the kids in front of the TV and go into the bedroom. You need a nap. One hand holds my book, the other absent-mindedly strokes your arm as you fall asleep. Our window-unit blows cold air full blast. Finishing my chapter I close the book and snuggle into you.

It’s here I dive into your breath. Right now, I am here in your arms. Our children are downstairs, healthy.

A recent family conversation surfaces in my mind.

Riley asked, “How old was I when I lost my autism? Ten? Eleven?”

We were both taken aback and thrilled and charmed, though we played cool as cucumbers. She no longer identifies herself as on the spectrum. Imagine that?

In the next turn of conversation, Seth shared that when he sees someone hurting, he feels it physically in his body.

Me too, baby. We’re the same.

You’re breathing, and I look at our freshly painted bedroom walls and remember when I slept in a basement. There was pink insulation for walls and I nailed sheets to the two-by-four beams for privacy. The floor was cold concrete.

I close my eyes and focus on your breath, disappearing into it.

Believing in you, believing in us, believing I truly have everything.

Posted in appreciation, Uncategorized | 5 Comments

What is Happening?

A little boy, one we don’t know, swam over to Riley as she was sitting on the edge of the pool, tentatively easing her way into the water. He was about ten. As he approached her he asked, with a glint of mean in his eye, “Do you want to have a water fight?”

She replied sweetly, “No thank you,” and as she said it I noted him drawing his hand back ready to just knock her flat with a big wave. At long last she finally took her feet off the bottom of the pool this week. Something like this could really set her back. I stood up behind her and gave him “the look” which made him instantly back off and slink away. Seriously, you do not want to be on the receiving end of my “look.” It’ll blow your hair back. Riley missed the whole exchange.

A chubby little girl we’d never met before, we’ll call her Emmie, she wanted to hang out with us. There is always one. A lonely neglected clinger-on. She hinted about how hungry she was and how badly she wanted something from the concession stand. My kids are secondary to kids like this. What they want is attention from me. They are starving for it.

Seth jumped in and immediately joined a dozen kids playing Marco polo. Easy, peasy.

Riley was mad when treading water didn’t come easily. Just because she does something once, doesn’t mean she can do it the next time. But she did eventually get those feet off the bottom of the pool again. And she put her head under water a few times, without plugging her nose. This is a huge victory. I spent a lot of time gliding her through the water, helping her get the feeling of swimming. Another boy about ten years old swam up to us and asked incredulously,

“Can’t she swim?”

I told him, “She’s learning. She’s getting there,” and then moved away from him as quickly as I could, hoping Riley wouldn’t ask to get out of the pool due to embarrassment. Thankfully, she didn’t.

I watched as the mean boy who had first approached Riley slinked up to a kid who was resting, hanging on the edge of the pool. For no reason, he full on body slammed him from behind. When the kid turned around to confront him the mean boy immediately said, “Ooops! Are you okay?” His feigning of concern disarmed the other boy and he let it go. Total manipulation. No parents in sight for either of them.

Another boy about twelve was in charge of three toddlers. And I have to say he was doing an awesome job. He took each one into the pool while the other two sat in a chair. He glided them through the water like I did my girl. They really trusted him. He fed them lunch, and then at one point commanded them to stay in the chair, while he jumped in the water and spent a brief moment of play with his friends. Where was his mother? Whose babies were these? Why was this boy thrust into this role?

There were at least three other kids with autism there, at that hour, that day. Any pool America. And those are just the ones that were easily detectable. Toe walking, hand flapping, etc.

A little girl, about five walked in front of my chair as I was packing up to leave. My kids stood shivering in towels, ready to go. This little girl had the braids Riley has coveted since we moved to our very diverse neighborhood. She had the whole head bob going on, lots of sass, and as she passed in front of me she said to her friend, in a voice that was obviously picked up from a much older relative,

“Girl, what is happening in this world?” She shook her head solemnly which was adorable for a five year old and said again,

“What is happening?”

Thinking about the events of the day, my eyes came to rest on a little boy standing in the pool shaking his head back and forth, back and forth, stim, stim, stimming.

I have to admit, I was wondering the same thing.

Posted in autism, special needs parenting, Uncategorized | 5 Comments

Look at her go!

It’s been a big week for Riley.

Over the weekend she had four girls sleep over. It went off without a hitch. Total success. Yesterday, our second day at the public pool this season, she took both feet off the bottom of the pool, and was able to tread water. No floats. No life jacket. No support. No panic. I’m not saying she can swim, be she was able to tread water for the first time in her life. She’s on her way!

And today at the park, she climbed to the very top of the play structure that has been one of the biggest nightmares for her. It was the first time she ever made it anywhere near the top.

She talked to herself the whole time. “I can do this. I can do this.”

What’s next? Riding a bike?

She’s worked so hard to be where she is today. We take nothing for granted. It’s been heartbreaking at times watching my baby struggle, but nothing beats the feeling I get watching her fly.

Posted in appreciation, Asperger's, special needs parenting, Uncategorized | 12 Comments

Helicopter Mom

It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing the Specific Carb Diet consumes a lot of my life. We are eating really, really well. The kids are on board, Riley especially loves every single bit of anything I offer her to eat. Seth is less enthusiastic, but he is supportive and does not complain. After all, his health is the impetus for doing this, and he wants his PANDAS gone. His tics are a lot better. Not gone, but almost undetectable to anyone who doesn’t know him. Right now it’s a very soft, vocal throat clearing and that’s it. No body movements. He has a hard time getting his words out. It’s not a stutter over individual words, it’s a whole sentence stutter. Especially when he is excited to say something, it takes a long time to get a sentence out of his mouth. But, it was only a few months ago that his ribs and jaw ached from the constant clenching so he’s obviously doing much better.

We stopped his IVIG after a six month trial. He definitely did not get sick as much while he was getting it, but it was just a band-aid, not getting to the bottom of why his immune system is compromised and not actually healing it, which is the real goal here. He had two bad reactions, and it was traumatic for him and the whole IV thing is so invasive. It was worth a try. I have been spending every waking moment researching a new therapy that shows promise though I am hesitant to even mention it here because it is the cause for huge fights between the “bio-med” world and the “ND” world and I have been there, done that, and don’t need all the fury blasted my way.

I don’t fit neatly into either group. For the uninitiated, “Bio-med” people treat their kids medically and try to cure autism and tend to see it as a tragedy. The so called “ND” (neuro-diverse) people believe autism is just a different way of being and we should not attempt to “cure” it.

I believe the autism epidemic and the increase in other related auto-immune disorders are a result of a genetic pre-disposition, and environmental triggers with an overzealous vaccine schedule being a big player(though not the only player, for example our food supply is sick). We’re now up to one in 55 boys in the U.S. DID YOU GET THAT? (And if you are adamant that vaccines have nothing to do with it, I assume you have read very little on the subject, and that what you have read has been spoon fed to you by agencies that are bought and paid for by the pharmaceutical industry. A short list will be added to the end of this post so you can do more homework and be more informed if you choose to be). I believe that when kids with autism act out, it is because they are physically and emotionally hurting. I believe their behavior is trying to tell us something and is a call for help. I believe working on behavior without addressing the underlying reasons for the behavior is cruel. I tried my best to do my little part to educate people on this when Riley was little, and mostly people don’t want to hear it. I tired of bashing my head against the wall and stopped trying to convince anyone of anything. Rattling the cage was getting me nowhere and taking away from my ability to actually be present with my children. I am quite a sensitive person myself, and my constant anger was negatively affecting my health. I feared there would be nothing left of me to care for my kids if I didn’t back off. There is a new website called The Thinking Mom’s Revolution which has taken up the cause if you are interested in reading more from bio-med moms in the trenches. These women are full of heart.

While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts.

She did send me into panic attacks early on with her near constant screaming…which led us to seek out bio-med therapies to try to help her. You know that parable about the people on the roof in the flood and they keep refusing help because they are waiting for God to save them? They send away boats and helicopters etc., and they wind up drowning and after death ask God, “Why didn’t you help me?” and God’s all…. I sent you the ‘effing boat, and the helicopter,etc.. That’s right, my God can sling it like a sailor(we all make God in our own image). And She’s sent a lot of help which we’ve gratefully accepted. We’ve done a ton of bio-med therapies. Most have been helpful. Some miraculously so (Berard Auditory Training, methyl B12 injections).

When she was at her worst, I used to sit in Riley’s room at night, on a rocker, meditating as she slept, envisioning her in white light, calling all angels, “Help my child. Help her.” I would alternate between beseeching, and visualizing her well. I would talk to her soul-to-soul, “Riley, haven’t we had enough of this yet?”

And I heard, “We are healing together.” I had the distinct feeling she was holding out for me. She was transforming me. She was teaching me unconditional love. She was teaching me that people act out when they hurt. That goes for little bitties with autism. That goes for alcoholic parents. That goes for everyone. She was cracking open my heart.

Hearts are being cracked open all over the place at alarming rates, and it hurts. Transformation can be brutal.

I am not the same as I was before autism hit our family. It has been painful. And it has been a gift. AND, I will continue to do what I can to heal my children, and heal myself.

‘Cause when God sends a helicopter? You don’t have to ask me twice. I’m grabbing my family and hopping on.

Resources for you if you are interested in being more informed:  

*MMR Ruling/Daily Mail

*Evidence of Harm, David Kirby

*Healing the New Childhood Epidemics, Kenneth Bock

*http://www.safeminds.org/government-affairs/foia/simpsonwood.html

*http://www.rescuepost.com/files/prenatal-thimerosal-and-neurotransmitter-imbalances-in-rats.pdf

 

*http://sanevax.org/adverse-events-following-12-and-18-month-vaccinations-a-population-based-self-controlled-case-series-analysis/

* http://www.ncbi.nlm.nih.gov/pubmed/16988466

*What Your Doctor May Not Tell You About Children’s Vaccinations

*Vaccine Epidemic

*http://sanevax.org/

* Hannah Poling Case/CBS News

*http://www.ageofautism.com/science/

 

 

 

Posted in Asperger's, autism, bio-med, IVIG, PANDAS, special needs parenting, Specific Carb Diet, spirituality, Uncategorized | Comments Off on Helicopter Mom

Swim With a Stud-Muffin

Living from the Heart is offering an amazing dolphin retreat in Sept.

 

 

 

 

 

 

 

 

 

This is Seth with Amizcle, (Uh-MEEZ-clay) the enormous 600 lb playful loving dolphin stud-muffin (he’s got like 18 kids). He is the guy we spent most of our time with when we made the trip to Mexico in November.

If you have a child with special needs, they will be 100% accommodated and no one bats an eye at any behaviors. If you have only typicals, they will have a blast. All are welcome.

If you’ve always wanted to go to Mexico, or swim with the dolphins this is a great opportunity for a family vacation with lodging and most meals covered in the cost.

$1,888.50 for a family of four.

If a retreat is not in the cards for you this year, perhaps enjoy living vicariously by reading Macy’s blog and watching the videos of the dolphins on her site. It is so relaxing to do so. File Cozumel in your dreams and perhaps one day, maybe sooner than you think, you’ll be experiencing Amizcle’s magic for yourself. You never know.

 

 

 

 

 

 

 

 

 

I’ll never get over Riley riding a dolphin across that pool. She started showering on her own after we got home from the trip. No longer afraid to get her face wet. No longer afraid to let go of me in the water. I know I probably already blogged this but I am still in awe and will never take it for granted. She’s upstairs in the shower right now as I type this. Last year I had to stand there the whole time. Rinse her hair for her. Listen to her cry over it. Flinching the whole time. Now she does it herself. To me, this is a miracle. This is a load off. This is a step toward living independently one day. I really adore Macy who runs the program and can’t say enough good about it. So pardon me if I repeat myself like an old grandmother who doesn’t remember what she told you yesterday(I truly often don’t remember what I wrote yesterday). Indulge me, while I sit here typing, drinking my tea, not rinsing my child’s hair.

 

 

 

 

 

 

 

 

 

I really hope to tell as many people as possible about Living from the Heart.

Did I mention since we got back, when I tuck Seth in at night I pretend to give him sonar? I put my lips to his forehead and make dolphin sonar noises. He pretends to only tolerate it, but secretly he loves it. I know he does.

Posted in appreciation, Asperger's, Dolphin Therapy, Mexico, special needs parenting, Uncategorized | 3 Comments